Tuesday 8 January Ramble
January 9, 2013 — Headless“Don’t be fooled by the calendar. There are only as many days in the year as you make use of.” – Charles Richards
SUre enough – 2:20am – up and into the Honey Puffs, and Milo and wondering where my watch is, (I have been up 5 times already looking for it, even though I know it is on my dresser and checked that the 5 bloody times, my brain can’t seem to lock it off as a task done so to speak). Welcome to the steroid night hours – cue music dah, dah, doh, doh. The brain tells you one thing but it doesn’t close it off if you like on the otherside. Really a messed up way to be. Just thought I would explain what it is like dealing with these drugs. Thankfully my spray balances it out a bit and I can settle and sleep. So have had a restless sleep again.
Up about 7:45 as another at work to be had. Feeling very jaded though understandably. Head downstairs to make a cuppa and login to check emails, etc. Have some breakfast and get ready to face the day. Work is good with a couple of jobs to work on. So head into a busy day. The boys keep themselves busy too and out of my way which is great. Need to clear my head for a bit so we head to McDonalds for lunch about 11:45 and walk home again. Get a call from Nurse Maude after we’re back and they are coming to see me about 3:30 to discuss what happened on Saturday, etc.
Get on with work, and Sue gets home as Nurse Maude arrive. Have a great meeting with them and go over what happened on Saturday and etc. Have a new plan we have come up with that could help me out better, so will have more meds to collect again tomorrow from the Chemist, and a routine to setup and maybe look at a practice run. The only certain thing they seem to have is that another event with the pain could/would happen again yet, as much as they believe that another bigger siezure will also happen. As with the pattern of life with these bloody Mofo’s there is no set standard of events, or this will happen , then this, then this, sort of order. It is bloody frustrating and tiring and to be really honest, frightening!! I know I’ve said it before but I’ll say it again, there is changes everyday, and today I think it is the recovery ability from these turns is todays one. The Nurses that I have only meet a couple of time have said that I am looking tired and others have also said similar as I am feeling very knackered to be honest. But, yes it is taking longer to get over these little incidents.
Aubery visits – great to see your always cheerful face Aubery. We have a good catch up and get Aub to give some advice on the garden setup and come up with a plan for it. Thanks Aubery for all your expert advice and giving me a list of things that I can get the boys to start working on when they get under my feet.
Sue gets dinner ready while I finish up fixing a problem that needs to be resolved. Zoe gives us a quick call – nice to have a chat Zoe. Sue and I go for a walk around the small block – 2.5kms – tonight as I needed to escape the 4 walls and have a talk about things. All good and nice to see we are not the only street that is torn to pieces again. Nice they stopped for Xmas at least. Try to get the blog done then but keep drifting off – sorry it is so late again folks – got to seriously look at when I write this up better.
Hope that everyone has had a great day and nothing to rough has happened. If it is your second day back at work then well done as they say that it is in fact the hardest day back as you are still sliding back into work on the first day and processing what you have coming up, but today you actually start the work. Sorry to bring you down folks 
Have an awesome evening/arvo/day – nearly hump day! Take care (and no more wasp stings Joh – that looked and sounded bloody nasty little Mofo!) – ouch!!!
Kia Kaha.
January 9, 2013 at 8:05 pm
Hi Tony, sorry to read about the pain. It’s a bitch isn’t it! I have nowhere near what you have to deal with but I am having to take daily painkillers that keep creeping up in dosage and I hate the way the drugs fog my mind. However, hope springs eternal! Hang in there mate. I read your wrap up for 2012. I wrote one for 2012 as well on my Facebook page, you might care to get Sue to find it for you and have a read. I think of you mate and the only advice I can give at this stage is continue to do what you feel is right for you and those you love. Hold onto hope. I think it is the most important thing we can do, Without hope we can’t imagine and without imaging we can’t see any any future but the obvious, when actually the future is endlessly unknowable. Whatever you hope for has power and as you are discovering you have power that you never imagined you had. Fear is has only a limited, say if you have big lion you need to run from :-). I have always believed anyway that courage is not the absence of fear anyway but the acknowledgement of it, the ignoring of it and the ability to act regardless. Only the truly ignorant don’t fear but it’s not really that important in the bigger picture
You have my support and I am always here to talk if you want. I turn 50 tomorrow! Time to celebrate – hah, never thought I’d say that! The doctors say, worst case scenario I’ll be dead in about 2 weeks and best case scenario about 4 months. ha, bugger that for a game of Skittles! They’re only doctors not God and I’ll believe what I want to believe because what I decide is so much more powerful than anything that can tell me from their oh so limited perspective! Don’t believe the hype! Stay strong, hope, fight, survive!!! With much respect and admiration, David.
January 9, 2013 at 9:11 am
From my own personal experience of N Maude D Nurses 3 times weekly for 4 years I can say that I think they are of more value than anything or anybody – real chalkface people, efficient, thorough, practical – angels from heaven. better than medicos in some ways if you follow, and they manage to give positive encouragement always. Hope you have a good week Tony,